Hospice Patients Alliance
Emergency Answer Center

May the path you
choose
bring peace and comfort
to your loved one!

There are many wonderful hospices in our nation, and there are
many wonderful hospice staff serving the public who are extremely
dedicated and caring. However, there is another side to health
care: the following are actual questions commonly received
here at the Hospice Patients Alliance. We provide these
examples here so that perhaps you may find an answer to questions
you may have about your situation. You can quickly scan the
topics by scrolling down to find the red word:
"Question."

In some cases, problems arise from simple errors in judgment,
from ignorance or carelessness, and are unintentional. In other
situations, greed may prevail over abiding by the standards of
care and a hospice may choose to "cut corners," in
certain situations (where they think they can get away with it)
with devastating results to a patient or family here and there.

We don't believe that even the "rogue" hospices
are "bad" all the time ... they may provide
excellent hospice care to one patient and then provide either
poor care to another patient in a particular type of situation or
deny care altogether (in order to save or make money). The health
care industry is in constant flux, always changing and evolving.
While there is constant pressure to cut costs and services, the
standards of care require decent, quality hospice care to be
provided.

There is no one answer to the problems of health care or hospice
care, but eliminating health care fraud would help...increasing
funding for health care would help. Eliminating the
"for-profit motive" out of health care decision-making
would help. That is not to say that health care industries cannot
make money; they should. But when top executives are getting
millions of dollars salary and benefits per year and patients are
denied basic care, something terribly wrong is happening.

Health care is a "calling" for the professionals that
serve from their heart, in the field. Yet for some administrators
in many agencies, it is solely a business that they happen to be
working in. The charitable, non-profit motivation which started
almost all great facilities in our nation needs to be
strengthened in health care.

Large health care corporations complain about the cost of
providing service, yet many make millions of dollars in profit,
or pay administrators millions in salary and benefits.
Pharmaceutical and durable medical equipment companies are
extremely profitable. What happened to the heart of health care?
What happened to the idea that we serve each other out of love,
dedication, and the mission of health care? We hope that more of
us will be motivated to start non-profit, charitable health care
agencies, facilities and institutions where the public can be
truly well-served!

We hope that you will find an answer that applies to your
hospice emergency situation. If you don't find your answer
here, check the main list of topics on our homepage and read the
topic that seems to apply to your situation.

Question:
My brother entered
hospice after several months of battling lung cancer. He also has
emphysema and suffered a stroke. When he entered hospice we had
the understanding that occupational and physical therapy would be
provided in an effort to keep him comfortable with the goal of
trying to make him stronger.

Today, the occupational therapist came out and said that therapy
is not generally permitted for hospice patients because Medicare
frowns on providing therapy for what may very well be terminally
ill patients.

This doesn't seem right. My brother has been feeling
stronger day by day and wants to work at regaining some strength
for as long as he's here with us. Is what the therapist said
true? Can they simply deny my brother the therapy he wants and
needs? Any help you can provide with this would be greatly
appreciated.

Answer:

In hospice, everything done for your brother really is aimed
at improving the quality of life he has while he is with you.
Managing symptoms is part of hospice, but therapy is also a part
of hospice if there is a possible gain to be made. If your
brother had a stroke, how much mental function and physical
ability does he still have? Certainly, you are correct that
hospice must provide occupational therapy if it will increase the
quality of life for your brother, even though he is terminal.

It is simply untrue to say that Medicare discourages hospices
from providing therapy to hospice patients. In fact, the
regulations require hospice to provide therapy if it meets the
need of the patient and will improve the patient's quality of
life! The regulation about hospice and therapy can be found
posted on our website (and is part of the Code of Federal
Regulations) at: 42 CFR ch. iv. section
418.92. Just find the section 418.92 which states:

(a) Physical therapy services, occupational therapy
services, and speech-language pathology services must be
available, and when provided, offered in a manner consistent with
accepted standards of practice.

Hospices are paid on a "per-diem" basis and get a
lump sum of money per day. They are then required to provide
whatever the patient reasonably needs to maintain or achieve
comfort and help improve the quality of life as much as is
realistically possible. Hospices can make more money (even
nonprofits) by skimping on services. I don't know the exact
condition of your brother, but if his physician determines that
he would actually benefit from therapy, then the hospice must
provide that service.

On the other hand, if your brother is truly weak and getting
close to passing on, then doing the therapy could actually be
almost "torture" for your brother. It really depends on
his situation. Building up strength in the terminally ill is not
always possible. If your brother were in remission, then that
would be a worthy goal, but if he is at a late stage of the
terminal illness, his metabolism may not be able to build up
tissue/muscles etc. by absorbing the nutrients, processing them
and creating new cells/tissue etc.

There is something called an "anabolic" state of
metabolism and something else called a "catabolic"
state of metabolism. If your brother is in serious metabolic
decline, his metabolism would be catabolic and breaking down
tissue, basically "falling apart" so to speak, or in
other words: his organ systems may be failing.

The type of metabolism can be detected when the physician
evaluates lab results, kidney function, etc. The anabolic state
is the healthy state where our bodies are building up tissue and
we are actively creating new tissues/cells, etc. All terminally
ill will eventually end up in the catabolic state if they
don't die of a sudden heart attack or pulmonary embolism or
something like that.

So, to sum up, if in the physician's view, your brother has
potential to benefit from the therapy, and your physician orders
it, the hospice must provide that therapy. It would be helpful to
speak with the physician and get an understanding of what your
brother may accomplish in therapy. Then speak with the hospice RN
case manager and work together to form a realistic plan that
allows your brother to do therapy which he can tolerate and
benefit from.

Question:
In the past weeks, the
hospice folks have been rather surprised at how well my brother
has been doing. They claim that he has more air moving through
his lungs, his appetite and color are excellent and he appears to
be responding very well to occupational and physical therapy.
They are talking about taking him off hospice and putting him
into their home health care service. However, we are getting
conflicting answers when we try to get an idea of the difference
between the two. One person tells us he will get more therapy,
another says less. I do know that we would need to pay for his
supplies (diapers, etc.) if he's not in hospice, but
everything else is unclear.

Answer:

It is a good idea to trust your instincts! In hospice,
all nursing services, therapies, medications and other
supplies must be provided by the hospice, but this is only appropriate if your brother is truly terminal!

If your brother gets off hospice, then he would again be eligible under the general Medicare benefit, but you should be aware that that doesn't pay for medications or
supplies as hospice does. The general Medicare benefit reimburses the home
health agency for nursing visits and home health aide visits, but
there is no provision for other levels of care such as hospice
"continuous nursing care."

The regulations for regular Medicare home
care visits states that all services must be "necessary and
reasonable." That is the standard requirement throughout
Medicare.

One thing to remember, you can switch back to
hospice if your brother's condition again shows signs of decline and he becomes hospice appropriate. Even if the hospice agency did not seek to discharge your brother, the patient can always revoke (or get rid of) the hospice benefit and go back to regular Medicare part A (when the patient is showing signs of improvement and hospice is not appropriate, ... or, when the hospice agency is not providing proper care and you wish to remove the patient from their influence. You can also transfer from one hospice agency to another once within any certification period.

Sec. 418.28 Revoking the election of hospice care.

(a) An individual or representative may revoke the
individual's election of hospice care at any time during an
election period. (b) To revoke the election of hospice care, the
individual or representative must file a statement with the
hospice that includes the following information: (1) A signed
statement that the individual or representative revokes the
individual's election for Medicare coverage of hospice care
for the remainder of that election period. (2) The date that the
revocation is to be effective. (An individual or representative
may not designate an effective date earlier than the date that
the revocation is made). (c) An individual, upon revocation of
the election of Medicare coverage of hospice care for a
particular election period-- (1) Is no longer covered under
Medicare for hospice care; (2) Resumes Medicare coverage of the
benefits waived under Sec. 418.24(e)(2); and (3) May at any time
elect to receive hospice coverage for any other hospice election
periods that he or she is eligible to receive.

Your brother has the right to either stay in hospice (only if he fits the criteria for being terminal). The hospice is not only allowed to discharge non-terminal patients, but is required to do so; otherwise they would be billing for services to non-terminal patients (which is fraud!). Any patient may choose
to revoke the hospice benefit as well.

Question:
I can't find the
regulations that establish the standards of care for
Hospice...where can I find them?

Answer:

You can find the regulations on hospice in the Code of Federal
Regulations 42 CFR ch. iv. Section 418. These laws can be seen at
this website at: www.hospicepatients.org/law.html

Question:
My friend is dying with
cancer and has severe pain. He has no money to pay for the
medications. What should we do?

Answer:

Hospice provides all the medications related to managing the
symptoms of the terminal illness. There can be a 5 percent co-pay
up to a maximum of $5.- so getting admitted to hospice care would
be the best way to make sure your friend's pain is controlled
with medications.

Question:
My Dad is in a nursing
home and has signed up for hospice as well, but nobody comes when
he puts on the call-light. The nursing home says the hospice
should take care of my Dad, and the hospice says the nursing home
is responsible, what should I do?

Answer:

When a patient is in a nursing home and also enrolled in the
hospice, the hospice has the legal obligation to make sure the
patients needs are being met, especially with regard to managing
his symptoms which are caused by the terminal illness. The
hospice must also make sure that the care being given is
adequate. How does the hospice do this? The hospice must set up a
"hospice care plan" that meets the needs of the patient
and must make sure that the nursing home staff provide care
according to the plan.

In situations where the patient is in a crisis with severe
symptoms out of control (like uncontrolled pain, seizures,
vomiting, agitation and other symptoms) then the hospice actually
must provide hospice staff/licensed nurses and aides as needed until the crisis is controlled. This may involve an RN or LPN visit working in consultation with a hospice physician or the patient's own attending physician. It may involve hospice staff staying for longer periods until the symptoms are under control. This applies even when the
hospice patient is living in a nursing home. See the topics on
the Four
Levels of Hospice Care.

Please don't let the nursing home or hospice give you the
run around in any way. In any case, the law requires that your
father's needs for care be met on all levels by either the nursing home or hospice staff, just as if he
were at home in his own home. The nursing home is considered to
be his "home" for hospice purposes and must provide the
day to day routine bedside care when the hospice staff are not
there to do so.

Question:
But the nursing home
still doesn't come when my Dad puts the call light on and
they won't provide disposable diapers. Sometimes it takes
them 20 minutes or more to come to the room. They are really
short-staffed! What should I do? And I'm really worried about
when he gets worse! If it's bad now, what will happen when my
Dad has severe pain, even worse than he has now?

Answer:

It can be confusing, but the main thing to keep clear is that
for the purposes of the hospice regulations, your Dad is in his
"home" (which can be his actual own home, a foster care
home, nursing home or other facility). The hospice is not
responsible for providing the daily bathing day in and day out
(unless they're already there), and if the nursing home
refuses to provide the daily care you will need to be ready to
meet with the director of nursing at the nursing home. If you
don't get prompt improvement, then it may be necessary to
place a complaint to the State licensing and certification
division which inspects the nursing home. You can find addresses
for your State's licensing and certification division from
our home page. Do not hesitate to place a complaint if you do not
get prompt action, because your Dad only has so much time here
(however much that is) and he needs proper care now.

The regulations do not require the nursing home to provide
disposable incontinent pads/diapers. They only have to provide
something, whether cloth or disposable. The facility must have a policy as to what the fee for room and board is for, what services and materials are provided for the residents. Get a copy of that in writing. If you choose not to take what they offer, then it is
your responsibility to purchase what you desire, unless (read
your contract which you or your Dad signed upon admission to the
nursing home) the contract with the nursing home specifically
states that they would provide the type of incontinent pad
desired by your Dad. You will have to read the fine print,
unfortunately, and see what it says about that.

If the facility is short-staffed as you say, then you need to
make it clear that you will not tolerate a lack of proper
services for your Dad, and if your Dad does not get his needs met
in a timely basis (keep a running written log of all nurse and
nurse aide visits to your Dad, day by day, every day and what
they did), then put that in a complaint to the State and give a
copy to the director of nursing. However, never raise your voice or become outwardly hostile to the staff; they can misinterpret your concern and accuse you falsely of being a "danger" to staff. Some have even been banned from the facilities, so be calm in their presence, but assertive! You'd be very surprised to
see how quickly things will improve!!

Unfortunately, in health care as in business elsewhere,
"the squeaky wheel gets the grease." You have to do a
little "squeaking" to get some attention, and let them
know in very clear terms that you will complain to the state if
they do not follow the regulations governing nursing homes for
staffing and care of your Dad. There are forms on our website for
filing complaints with the state. If the nursing home is The Joint Commission
accredited, then a complaint to The Joint Commission can also be made.

You may think that you can just "talk" to the director
and it will be corrected, but if it is corrected promptly only by
talking, then you'd be very lucky and one of the few. In many
cases, patients and families talk to the director and get a run
around, time goes by, and the patient dies without anything being
truly corrected. So, please "hear me" if you care for
your Dad and are serious about getting real change in his care.
Health care is a business for the administrators
and stockholders...nothing more, nothing less. The public
relations firms talk eloquently about how much they
"care" about the patients, but actions speak louder
than words. If they cared so much, they wouldn't be
understaffing. They know they're understaffing...they save
money that way and put the money into their pockets and the
pockets of their stockholders.

Hospice will and is required to get more involved if your
Dad's condition/terminal illness worsens/intensifies. Again,
the hospice is required to make sure that your Dad is kept
comfortable, that his nursing and medical needs are met and that
any needs for the family for counseling are also met. Only if
your Dad develops a crisis situation where a symptom is out of
control such as uncontrolled pain, vomiting, seizures, bleeding,
active phase of dying with uncontrolled symptoms, etc., would the
hospice be required to be there around the clock. Yes, even
though your Dad is in a nursing home, the hospice is REQUIRED to
provide 24 hour hospice nurses if there is a crisis with severe
uncontrolled symptoms, even in the nursing home! See our page on
Continuous Care Level of hospice
care.

24 hour nursing care by the hospice is called "Continuous
Care." 50% of the time when Continuous Care is provided, a
licensed nurse must be there. This means that an LPN or RN must
actually be providing the continuous care for 50% of the time CC
is provided. If 8 hours of CC, then 4 hours have to be provided
by a licensed nurse. If 24 hours of CC, then 12 hours have to be
provided by a licensed nurse. In addition, an RN must visit your
Dad at least once every day when CC is provided, in order to
assess his situation and make sure his needs are being met.

Only hospice nurses are specially trained to handle these types
of crises in terminal illnesses (although you may find some
nursing home nurses who are knowledgeable as well), and in
addition, the nursing home nurses are so busy, they cannot
possibly be in your Dad's room enough to properly monitor him
if he's in a real crisis situation. Many nursing home nurses
are reluctant to actually administer the medications that
physicians order for the terminally ill patients for pain or
other symptoms, because the orders are different from what
they're used to giving out. Some think the dosages are too
high, not realizing that for the pain to be controlled, in some
cases, sometimes the dosage has to be very high. That's why
it's so important for you and your sister to be there as much
as possible, and protect him, advocate for him and his needs and
get him the care he needs and which the law requires be provided
for him.

Also, remember, the nursing home is taking your money for the
care it is supposed to provide. If it doesn't provide the
care, that is fraud! The hospice is taking money from Medicare or
the insurance company for services, and it is required to provide
whatever services are needed to make sure your Dad's symptoms
are controlled (to the best ability of medical science) and that
he gets the care he needs. They have to work with the nursing
home to get that done. Today in health care you need to be
"assertive," and that's just the way it is,
unfortunately. Please let us know if there are any further
problems or questions.

Question:
The nursing home
situation isn't working out. We talked to the nursing home
director and still nothing's changed. Can we move my Dad out
to another hospice facility and change hospices?

Answer:

Yes, although almost every hospice would tell you that you
shouldn't move your Dad and they don't recommend
switching, you always have the right to change hospices at least
once within a hospice "certification period." You are
in charge.

Remember, hospices are businesses that receive their money from
having patients enrolled in their program. If your Dad leaves
their program, they lose money. You need to decide what is best
for your Dad, not what is best for the hospice's financial
cash flow. If the hospice wants to retain your Dad as a
"client" using their services, then they need to
provide high quality hospice services, just like any other
business. The thousands of hospices in our nation are separate
businesses, whether they are non-profit corporations or
for-profit corporations.

There is no such thing as "Hospice" that
includes all the hospices in our nation. Even though the hospices
will raise money and say, "all your money goes to
"hospice" . . . the truth is that all the money will go
to their business, which just happens to be a hospice (Let's
have a "reality check" please!)

The hospice has no right to advise you that you can't change
hospices. If you really believe that services are not going to
improve promptly and your Dad is expected to live more than a few
days more, you may wish to change to another hospice or other
facility where he'll get better care. Hospice is about
providing comfort care, and the nursing home is supposed to
provide basic skilled nursing care, plus bedside care whenever
your Dad needs it. If your Dad is not getting his needs met, what
is the nursing home or hospice doing? There are better hospices
and better nursing homes. We can't tell you which decision to
make, but if you want your Dad to be really well cared for, and
the hospice or nursing home is not doing their job, you always
have the right to move him to another facility.

Question:
My mother developed
cancer five years ago. She underwent many rounds of chemotherapy,
and has been considered terminal for more than a year. Recently
she has refused to take the morphine and forces herself to get up
and walk around. Now the RN case manager has suggested that my
Mom be terminated from hospice care. We are very upset! We
don't know what to do. The hospice nurses and home health
aides have been a great help to Mom. Can they terminate my Mom
from hospice care against her will as the RN suggested?

Answer:

I can only imagine the deep distress this shocking
announcement made upon you and your family. On the one hand, your
Mom has lived longer than perhaps they estimated, but the
regulations do not say that a terminally ill person has to die
within the six month period from the beginning of being certifed
as having a "terminal" illness. The regulations say
that the doctor must certify that the patient may die
within six months if the disease process runs its normal course.
This is a statistical probability given a certain diagnosis, not
a prediction of what actually has to happen. There are thousands
of hospice patients who have lived longer than six months, and
there are many who live much less than six months.

Hospice cannot discharge your mother just because she hasn't
died from the terminal illness. However, if your mother is not showing signs of decline, then they can discharge her as she is not "terminal" as defined by federal law; keeping her in hospice would be fraud!

It is up to your Mom's
attending physician to re-certify her when the
"certification period" is over. Every time a
certification period ends, the attending physician recertifies a
patient that still has a terminal illness. Of course, if there
were a misdiagnosis and she does not have a terminal illness then
that is a different story. If she is truly "cured" or getting better, then
hospice services would be ended, because your Mom wouldn't
need them. If your Mom's physician still certifies that she has the signs of being terminal, with signs of decline, she is still
eligible for hospice.

You need to speak directly with the RN case manager and tell her
that your Mom has chosen to keep the hospice benefit services,
and she does not want the services ended. We can't emphasize
enough that you need to advocate for your loved one. You need to
speak up and let them know what your Mom's wishes are.
Hospices cannot make these decisions for you! If your Mom
doesn't need frequent visits, the hospice can adjust the
schedule so the nurses visit less frequently, and then increase
them when she needs more help. IF the RN case manager does not
agree with you, you will need to speak with the hospice's
director of nursing services.

Question:
My family needs your
help. My brother has lung cancer that has spread and is now said
to be bone cancer. The bone cancer is in his spine, ribs and
hips. We want him to be able to be home and be comfortable. All
the doctors do is keep him in the hospital and give him enormous
amounts of Demerol. This is no way for a man to live. He's
very confused and sometimes hallucinates, because he's all
doped up. We don't know what else we can do. We've tried
chemotherapy and radiation. Please help us find an alternative
way for this man to finish his life with a little dignity. Please
send us any information you can.

Answer:

It is not usual for a cancer patient to be kept in a hospital
longterm for pain control. Hospices can provide the care which
you are seeking to help your loved one be as comfortable as
realistically possible under the circumstances. It appears that
the physicians involved may not be experts in hospice care. Some
doctors are not always well-trained in comfort measures for end
of life care, although many are. Even though they are the experts
in trying to treat the disease and cure it, care directed toward
curing is not the same as medical care directed toward what is
called "comfort measures" or "palliative
care." Hospice care or palliative care is a specialty in the
medical field.

Demerol is notorious for having serious side-effects such as
hallucinations or delusions, and other adverse effects. It may be
used short-term in the hospital under some circumstances, but
most experts in palliative care or hospice care do not commonly
use it for longterm treatment for the pain from cancer, although
each physician has their own medication of choice. A change of medication may help!

Narcotics (opioids) are commonly used to treat serious pain in
terminal illness, and there should be no stigma or blame for the
patient who requires strong narcotics to ease their pain. There
is no danger of addiction, because the patient is dying anyway,
and so, using narcotics to relieve pain in this circumstance is
the compassionate, loving thing to do to help them have a better
quality of life, than the sometimes excruciating and severe pain
of some cancers.

You mention that your brother has lung cancer which has also
spread and become bone cancer as well. Many physicians order
medications to "dry up" the excessive secretions which
create congestion in the lungs and can cause the lungs to fill up
with fluid. Medications such as scopolamine, atropine or
hyoscyamine may be given to help the patient breathe better, and
these medications are given right up to the very end, otherwise
the lung congestion worsens and makes the patient even more
uncomfortable. Your brother could benefit greatly from finding a
physician who is skilled at pain management and hospice care.

Pain caused by cancer in the spine and bones can be quite
painful (understatement) and is not always easy to relieve. Your
brother may need a medical expert in pain management who has
hospice experience or is very well informed about treating such
pain (a palliative care expert in pain management). If you contact one of the larger hospitals in your area,
you may ask to find out where the nearest "Pain Clinic"
is for a consultation with some of the physicians there, or you
could contact a hospice in your area (look in the yellow pages
for a listing under "hospice.") and ask them if they
can recommend a physician who is very good at handling pain in
the terminally ill.

Bone cancer pain is not something that just "any"
doctor can effectively treat, please understand. There are
different medications which physicians order to be given, and
different treatments. Sometimes Intravenous (IV) morphine (a
morphine "drip" may be given or other opioid
medications (narcotics), and also, ibuprofen (Motrin) or other
pain medications may also be given. The evaluation of your
brother's situation must be conducted by a physician who is
experienced in pain control. Some physicians even cut small nerves to relieve pain that is not responding to other methods and that can block the pain and bring relief for the patient.

It is sometimes surprising that a knowledgeable physician may
order a seemingly less strong medications like Motrin (in strong
doses) along with the narcotics given to ease the pain, and get
relief from pain for the patient, even though a strong dose of
narcotics alone may not be able to alleviate the pain all by
itself. In some cases, surgery is done to stop the pain, and
sometimes radiation treatment may be performed. There are so many
different ways of dealing with pain that truly, you need to get
expert medical advice from a qualified physician.

Your concern about your loved one being all "doped up"
is understandable. However, when there is extreme pain, patients
do not always get "doped up" when receiving narcotics.
It may be that the choice of Demerol may be the problem and
perhaps another medication would be more appropriate. It is
important for you and the patient to communicate your wishes for
pain relief to be given, yet you also need to communicate that
you don't want your loved one to be confused.

It should be understood that in some cases, it is not always
possible to have both pain relief and full alertness right up to
the end. Some patients only obtain relief from pain with massive
doses of narcotics and sedatives and they die peacefully in their
sleep. However, a pain specialist (not just a hospice nurse!) might be able to do a better job in these cases.

Some patients choose to refuse to take any pain medications due
to a "prejudice" against narcotics and don't want
anything to do with them, but they suffer tremendously from the
severe pain. You can know that the pain is severe, even though
the patient tries to hide that from you sometimes, by observing
the patient to see if his body is relaxed, his jaw and face
relaxed and how he holds himself when moved in bed or moving
around the room walking. Any rigidity and tightness may be likely
signs of severe pain. In this type of case, it is important to
work with the patient, honor his wishes, yet also make sure he or
she is fully informed of what can be done to relieve that pain,
so he can make an informed choice. We can't always get total
relief from pain while at the same time remaining fully alert,
but it is a worthy goal which can sometimes be achieved.

So, it appears that you may wish to call a local hospice or pain
clinic in your area. From there, you can ask questions of the
physicians and nurses about your loved one's needs and what
services might be provided. Keeping him at home is another
question.

If you and your family have the manpower to be there for him
around the clock and are able to help care for him, then you may
be able to keep him at home till the end. Or, if you have the
finances to hire private duty nurses at times, then it could be
done. Hospice will only provide 24 hour around the clock
"continuous nursing care" if the patient is in
uncontrolled pain or a crisis of another sort, and once the
crisis is resolved, then the 24 hour care is discontinued. If
your brother's pain is severe and uncontrolled, a good
hospice will provide 24 hour care until the pain crisis is
managed and your brother is more comfortable.

Question:
My mother has just been
enrolled in hospice due to her emphysema and kidney disease. She
has severe reactions to morphine and becomes very lethargic,
sleepy and confused, and her blood pressure drops. Doctors in the
past have warned her never to take it again. Mom told the hospice
she does not want morphine, but the hospice doctor has prescribed
morphine anyway. We are afraid that this can hasten our
mother's death. What can we do?

Answer:

In every aspect of health care, the patient always has the
right to accept or decline any form of treatment, medication or
care offered. In the situation as you describe it, your mother
has the right to refuse to take morphine and if she clearly
refuses it, the hospice cannot force her to take the morphine. In
some cases, physicians use morphine for difficulties with
breathing that is labored and when there is severe respiratory
congestion.

You need to first speak with the hospice physician and the
hospice RN case manager to get a clear understanding of their
explanation for the morphine and why they feel the medication is
appropriate. If however, you are still not convinced, and your
mother still does not wish to take any morphine, your mother can
put that refusal in writing (keep a copy for your records), give
a copy to the physician and hospice, and tell them that she will
not take any morphine. If the physician or nurse still refuses to
listen and imposes the medication, then you may wish inform them
that you will seek legal counsel.

If the hospice doctor or nurse forces your mother to take the
morphine (by pill, IV, injection or other form) against her will,
you may wish to change physicians, hospices and seek a competent
attorney who is not from the area where the hospice and doctor
work (political connections can cloud the situation and you need
objective, honest advice). You may even need to consult the
county district attorney or the state Attorney General's
office. Imposing a medication on a patient against his or her
will is not an accepted practice, whether medically or legally.
There are doctors and nurses who have been prosecuted for murder,
manslaughter and other varieties of criminal offenses for
imposing narcotics on a patient against their will or in flagrant
disregard of the standards of practice.

Question:
Our elderly aunt's
physician has prescribed morphine and encouraged her to enroll in
hospice. They now are teaching my father and sister to give the
morphine to her. Can family members give a narcotic? Is what they
are doing right?"

Answer:

The physician has the authority to prescribe the medication
and to approve of a family member giving the medication. The RN
case manager is responsible to teach the family members how to
give the medications, what adverse effects to watch for and when
to call the RN for further help. Giving narcotics is commonly
done by family members, even in hospice. Hospice provides many
services, but the family is still one of the most important parts
of the hospice team which provides care to the patient. If you
feel that your father or sister are not qualified or have not
received enough information about how to give the morphine, then
you need to speak with the RN case manager and ask for further
instruction and supervision.

Question:
A home health aide
writes that "in the hospice I work in, the nurses determine
who's able to get into hospice based on if the patient is
going to die real soon or not. If they believe the patient will
die very soon, they put them on home health and NOT on hospice.
It doesn't make any sense to me, because hospice is for the
dying, not home health! I don't know anything about the law,
but I don't feel good about this. I can't talk to the
hospice manager, because I'm afraid they'll fire me and
without my job, I won't be able to help support my family. Is
what they are doing right?"

Answer: The federal
law does not give the authority to an agency to decide whether or
not to put a patient into hospice or their home health
service.

It is the patient's attending physician who
"certifies" the patient as having the terminal illness,
and therefore eligible for the hospice benefit. In home health
care, the agency can bill Medicare (or other insurers) for the
nursing visits and services provided.

In hospice, the agency gets a set fee for each day the patient
is admitted to the hospice. The reimbursement goes way up if the
patient is getting around the clock "continuous nursing
care" level of care, but many hospices fudge on providing
the continuous care level of care and families are left ragged
wondering why they ever used hospice or what the hospice is for
in the first place if they're not there when the patient and
families need them!

Obviously, when the patient is very close to dying, within a few
days, many symptoms would be more intense and require more
intensive nursing care and other services. The home
health/hospice administrators may be thinking that if they
allowed the dying patient into the hospice at the end, they'd
be losing money or don't have the staff needed to cover all
the needs, but if they put the patient into home health, they can
get more money for the services they provide.

So what does the agency's business decisions (about
where to place the patient) have to do with the patient's
legal health care rights? Nothing.All patients that
are certified as terminally ill by their physician (due to
actually having a terminal illness) are eligible for hospice
services and all levels of care within the hospice benefit.
It is a violation of the standards for an agency to deny a
patient hospice care, just because he is going to die soon. That
is the opposite of what hospice is supposed to be about!

If you want to help the patients to get hospice care when they
need it, you may wish to consider sending a complaint to the
State licensing division, but if you do so, your identity may be
found out. You could send it anonymously without your name on it,
but the hospice may still "figure it out" if you have
voiced your opposition to this policy. If you truly wish to
remain anonymous, don't say a word to the hospice and keep
quiet while your anonymous complaint goes in to the State. The
hospice administrators know that they are violating the
standards, don't think for a minute that they are unaware of
the regulations.

You will have to look within yourself and see whether this is
important enough to you to risk retaliation by the hospice (if
they find out). Retaliation is not legal, but it is done
throughout the health care as well as other industries. If you do
decide to protest this wrong policy of the hospice, you may wish
to look for another job, realistically! More information about
these types of difficult situations for health care professionals
can be found at our website: "A word
to health care professionals" and at "Protecting yourself, your license &
family, financial & job security when dealing with fraud at
your employer." You should know that not all hospices
are like this. We receive letters from others like you who
question the illegal policies of their hospices. Often they say
that they left hospice for a while, but because their heart was
dedicated to hospice, they went to another hospice or started a
new hospice on their own. Look around at the other hospices in
the area; you may wish to switch to another hospice where quality
hospice care IS given. Best wishes and thanks for your caring
heart!

Question:
My uncle was
hospitalized and they found that he has terminal cancer. It's
gone undetected for a long time and our long-time family
physician recommended the local hospice in our area and told the
nurse in the hospital that we are all agreed that my uncle should
go to the local hospice. I came back the next day and found
another hospice transferring him out of the hospital to their
hospice which is not at all where the doctor and we want hime to
be. Can they just walk in and take my uncle to their hospice
against our wishes and the doctor's recommendation?

Answer:

This type of problem has been occurring in some areas where
there is fierce competition among separate hospice agencies for
patients. As unbelievable as it seems, some of the larger
hospices which are trying to "take over" a territory
and become the only hospice in the area are actually
"stealing" terminally ill patients from their hospital
beds. They have a social worker or nurse who is friendly to the
big hospice tipping them off that a new terminally ill patient
has been admitted to the hospital. Then before the local smaller
hospice can get there, they sign the patient up for their
hospice...and quickly transfer the patient out to the larger
hospice.

The family is confused and thinks, "it must be right,
because the doctor said he'd take care of everything."
So, they sign the papers, never suspecting that an illegal
transfer of the patient has occurred, against doctor's orders
and against their own best wishes. They find out later, but then
often decide that they don't wish to go through the hospice
admission process (which can be a lengthy interview and
assessment) over again to transfer their loved one to the correct
hospice agency. They don't know how to even begin to address
the problem and most people never find out about the
"switch"

To answer your question: No, they can't legally do it, but
some unethical hospices which are extremely competitive will do
almost "anything" to increase their cash flow (by
getting more patients). You can complain to the State licensing
board about such illegal transfers of your loved one, and also
make a complaint to the hospital where your uncle had been
hospitalized. Make sure the hospital's Board of Directors and
the hospice that your doctor had originally recommended knows
about what happened. You might even want to send a letter to the
editor of your local newspaper, so that it doesn't happen
again! Best wishes!

Question:
I took care of a dying
relative recently and a hospice was involved in his care. They
told me they did not provide 24 hour nursing care. They told me
that I would have to call an Agency and pay for care or I could
call one of the people on their list and hire them privately and
pay them. Is this right? It doesn't seem fair!

Answer:

When a hospice patient has severe symptoms which are out of
control and cannot be managed by the "routine home care
level of hospice care", then the hospice must provide
continuous care around the clock as needed by the patient to
manage the symptoms and get things under control. Uncontrolled
symptoms from a terminal illness are considered a hospice
emergency or crisis for the patient. The attending physician must
order that level of care (or any care) in hospice. Even
"standing orders" used by the hospice RN case manager
must be approved of beforehand by your loved one's attending
physician. The hospice is required to contact the physician if
the patient's symptoms are out of control and require more
intensive nursing and medical care to regain control.

Some hospices simply don't inform the doctor that
there's a problem. So call the attending physician
immediately yourself if the hospice is refusing to provide the
care your loved one needs. You always have the right to call the
attending physician yourself if the hospice is not doing their
job. A good hospice would have taken care of this by making sure
your loved ones have the nursing care needed. It is a violation
of the standards of care when the hospice does not provide that
continuous care when the criteria for continuous care are met ...
i.e., when the patient is suffering severe symptoms out of
control. This is not something that can wait for days of
"meetings" with hospice staff, for your loved one's
sake, it needs to be taken care of right away.

The only exception to the rule (about providing Continuous
nursing care level of care) that we know of is if the hospice is
very small (less than seven employees), out in a rural area,
and/or not licensed. If the hospice is taking Medicare, Medicaid
or private insurance reimbursement, it must be licensed. And if
it's licensed, then the hospice has to follow the
regulations. They cannot refuse to provide the care your loved
one needs. In fact, the regulations state that the hospice must
either provide the care themselves or they themselves must go out
and subcontract that care through another agency, and train those
nurses from the other agency to provide appropriate hospice care,
according to the hospice plan of care for your loved one. You can
see the law about hospice at our website at: the federal law on hospice.

For the hospice to force you to pay privately out of pocket for
that care is not right. You can require the hospice to
provide the care, and tell them that the regulations require them
to provide that care. If the RN case manager refuses to get
continuous care for your loved one, have the physician send a
written order for the continuous care to the hospice, (and you
get a copy as well). If you don't get immediate action (and
we mean "immediate") then speak to the hospice
director.

If the hospice director doesn't immediately order the care
to be provided, you can "demand" to speak with the
hospice medical director. The medical director of the hospice is
the person who can intervene if the hospice RN and director
don't help you. The hospice medical director is required by a
separate specific law, to intervene on your loved one's
behalf and make sure your loved one gets the care needed to
manage his or her symptoms!

If the hospice medical director refuses to act immediately to
order continuous care (yes, the hospice medical director can also
order the hospice to provide certain care and medications under
his or her own medical license), then you can file a written
complaint with the State licensing division. You can find the
address for your State licensing division at our website. There
is a complaint form there as well.
Information about filing a complaint is found at Complaint Information. Send in your complaint
to the state. You can find the address for your State's
licensing division at: State Addresses for
filing complaints.

You can give or fax the hospice a copy. If they still refuse,
then you can switch hospices as soon as possible. You always have
a right to switch hospices once within one hospice certification
period. You may tell them that you have filed a complaint and
that you are going to switch hospices. There are better hospices
out there that are ethical and do provide continuous care when
needed!

Question:
My sister had a heart
attack and now that she's older, has severe congestive heart
failure. The doctors don't give her much time to live. Could
you send me some information about your program in our area? I
would appreciate any information. Thank you.

Answer:

We are sorry to hear about your sister's condition. We are
not a hospice agency or direct provider of hospice care, and we
do not suggest or encourage the use of any one particular hospice
agency over another. The best way to find a hospice agency in
your area is to look in the local yellow pages directory or get a
reference from someone locally you know who had a good experience
with a hospice. We provide a list of resources for looking up
a hospice at our web page Find a
hospice. We wish you the best and if you have any questions
about the care or services your sister needs, please don't
hesitate to contact us.

Question:
I'm confused about
the term "Hospice." My brother sent a memorial donation
to "hospice," but the hospice that cared for our Dad
says they never got the money. My brother says he's sure he
sent it to "hospice" and he even has a cancelled check
to prove it. What's going on?

Answer:

The term, "Hospice" as a generic term, is widely
used by the more than 3,000 separate hospice agencies in the U.S.
When they raise money or speak about their program, they say,
"the money you donate will go to "Hospice," or
"Hospice is here for your loved ones." However,
there is no such thing as one "hospice" that
encompasses all of the U.S.

There are thousands of separate businesses called
"hospices" or "hospice agencies," and each
has its own separate administration, board of directors and legal
setup as a non-profit or for-profit corporation. We believe that
when the hospices themselves refer to "hospice" it
would be better for them to specify their own specific
hospice's name, because it is confusing to the public.

In addition, we have heard complaints from hospice directors who
find that donations to their hospice are taken by other hospices
when the public accidentally sends a donation to the wrong
hospice, thinking that one hospice agency is the other hospice
which provided care to their loved one. And the hospice that gets
the money by mistake (and knows it is a mistake because the
donation is sent "in memory of" a patient they never
served) often keeps the money anyway! ... what the public
doesn't know about what goes on behind closed doors in the
hospice industry!

We at the Hospice Patients Alliance are saddened when we hear
of the unnecessary and troubling problems that terminally ill
patients and their families are experiencing. The questions and
answers above are modified to protect the privacy of the families
involved, but are taken from real situations which actually
confronted families trying to access quality hospice care. These
situations are shared here so that others may benefit from seeing
what others have been going through and looking at the answers
provided.

NOTE: These answers are not to be
considered medical or legal advice. If you are seeking legal or
medical advice, you must contact your own physician or an
attorney. We suggest in that case that you print out a copy of
any relevant parts of the hospice regulations from the Code of
Federal Regulations available at our site at: www.hospicepatients.org/law.html or simply tell
the attorney that the regulations are found at: "42 CFR ch.
iv. part 418" and they will be able to get the law from
their reference books.

This website will always be in the process of construction,
with updates and additions. If you wish to suggest an emergency
question for this hospice information center, please let us know
about them.

We are grateful for your assistance in sharing vital
information
about your experience with hospice!